I Surrender

Hubby has been convinced for quite some time now, that he is being held in a V.A. Home and I am his caregiver (jailer).

Whenever he makes a comment about where we are, who's house this is, or a reference to "your house"  I have always corrected him in that the house belongs to us. In moments of frustrated proving, I've even pulled out paperwork to the fact but Hubby just says I have forged his name or tricked him into signing something.
 Since we have been dealing with extra anxiety lately I have decided to surrender to his delusion that the house belongs to me.
I have already accepted that he does not know who I am and instead of correcting him about the house I will just answer the questions or handle the statements as they are. The house is mine, our location is..
This hurts because I know I can prove to Hubby these things but I cant penetrate his beliefs so I must let go of it and watch Lewy steal it away.
In doing so there is less anxiety for both Hubby and myself. The anxiety of his belief we (Me Myself and I, remember there are 3 of us now) are tricking and confusing him is lessened as well as the anxiety of my desire to be right. I don't always have to be right, mumbles eventhoughIamaboutthis.

Some days dealing with Hubby's confusion is like trying to hold sand in a wind storm.
Some days he amazes me with what he does remember.

Tonight I am tired and a little sad because I feel like I've been lost forever in Hubby's mind. Part of me always wanted to believe I was in there somewhere in the deepest parts. And that may be true in the fact that he feels like I'm his security and comes looking for me when I'm out of the room even though he gets angry at me. Or perhaps he is hoping I finally flew the coop and he can make his get away ;-)
I'm also sad (jealous may be a better word) that he remembers people he met and knew for short periods of time and places he has been once in his life, but our home is no longer his.

I will try not to dwell on the negative.
As always I will regroup and adapt as needed.
But first, I think I'll have a donut.

The Experience of Dementia as a Journey –Author Unknown

An amazing caregiver in her own right and a wonderful friend, Bette, posted the following story and I loved it so much I wanted to post it here. If for no other reason than to read it again for my own self. I think it speaks for it's own self.

The Experience of Dementia as a Journey   –Author Unknown
I am going on a long journey by train.  As I begin, the city skyscrapers and country landscape look familiar.  As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable.  The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different.  The buildings have odd shapes and the trees don’t look quite the way I remember them.  I know that they are buildings and trees, but something about them is not quite right.  Maybe I’m in a different country with different architecture and plant life.  It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed.  They are barely taking notice of the passing scenery.  Maybe they have been here before.  I ask some questions, but nothing seems different to them.  I wonder if my mind is playing tricks on me.  I decide to act as if everything looks all right, but because it does not, I have to be on my guard.  This places some tension on me, but I believe I can tolerate it for the remainder of the trip.  I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong.  Everything looks strange and unfamiliar!  There is no similarity to anything I can recall from the past.  I must do something.  I talk to the other passengers about the strangeness I feel.  They look dumbfounded and when they answer, they talk in a new language.  Why won’t they talk in English, I wonder?  They look at me knowingly and with sympathy.  I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going.  The only answers I get are in this strange language, and even when I talk, my words sound strange to me.  Now I am truly frightened.
At this point, I figure that I have to get off this train, and find my way home.  I had not bargained for this when I started.  I get up to leave and bid a pleasant goodbye.  I don’t get very far, though, as the other passengers stop me and take me back to my seat.  It seems they want me to stay on the train whether I want to or not.  I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening.  Strange, inhuman-looking beings peer into the window at me.  I decide to make a run for it.  The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car.  There’s a door!  It is difficult to push, but I must.  It begins to open and I push harder.  Maybe now I will get away.  Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train.  I hear the door shut.  They take me back to my seat.  I realize now that I will never get off this train.  I will never get home.

How sad I feel.  I did not say goodbye to my friends or children.  As far as I know they do not know where I am.  The passengers look sympathetic, but they do not know how sad I feel.  maybe if they knew they would let me off the train.  I stop smiling, stop eating, stop trying to talk, and avoid looking out the window.  The passengers look worried.  They force me to eat.  It is difficult because I am too sad to be hungry.

I have no choice now.  I have to go along with the passengers because they seem to know where the journey will end.  Maybe they will get me there safely.  I fervently wish that I had never started out on this journey, but I know I cannot go back. (Author Unknown)

Order Up!

This post may be all over the place as that is how my thoughts feel today.
I am hoping that getting them down in print would sort them so please bear with me.

Hubby has been experiencing unexplained anxiety over the last few weeks.
I cant tell if this is related to his PTSD or his Lewy Body Dementia or perhaps a collision of both.
Anxiety that has caused him internal nervousness and fear. Fear he has actually expressed.
His accusations about me having him trapped here and stealing his money are hurtful but I try to rationalize them in my head. He really has no idea who I am or where he is and this HAS to be distressful.
I'm sure his fixation on his own death as of late has not helped the situation either.

At first it was easier to soothe his fears and calm him but as time passes the ability to do so is more difficult.
His verbal displeasure of being here and wanting to go has hightened. 
90% of the time I can easily shrug off his words. 9% I have to make a willful choice not to get sucked into his annoyance and the other 1% always finds me loaded with guilt because I let my mouth engage before my head.

Today I contacted Hubby's Dr and we have an appointment for next week. I think that's the quickest we have ever gotten an appointment for the V.A.

Then there are the times when Hubby is very calm.
He still talks to me about not being here and never wants me think it's because of anything I did.
At these times he talks to me about me. And lately I am a 3rd Kathy.
One day Hubby talked to me about getting out of here.
I asked him why he wanted to go.
His answer was that he didn't know but he needed to.
And it wasn't because Kathy wasn't taking care of him.
I inquired about Kathy and received a pleasant answer.
Apparently he felt that the one treated him quite well, "Almost like a God"
Then an uncomfortable answer,
the other didn't treat him bad but she could be hateful.
And when I asked him who I was, He replied "Kathy"
Then he said we were trying to confuse him and laid down.

Today started out unusually good.
Hubby wanted to go out and have breakfast.
I suggested another eating establishment with a greater variety to which he said, He didn't care.
MISTAKE!!
I wasn't thinking about the number of people in the restaurant and the amount of noise.
Bigger (menu) isn't always better.
Hubby jumped at every noise. I offered to have our food prepared to go but he insisted that it was okay and didn't want to leave.
During the meal Hubby complained about feeling nervous and shaky. He did finish his meal and we set out for home. Once inside he still complained about the nervous and shaky.
He needed assistance removing a shirt for his comfort.
I went through all the reg questions about illness to assess the situation.
Hubby rested.

Later in the evening Hubby announced that he felt his time was almost up.
What do you say to this? How do you respond?
I never know what to do except lay near him and talk calmly about other things.
Then the conversation took a sharp turn to accusations of thievery and entrapment.
I chose not to stay there so I went to another part of the house for a few mins. He finally settled down and I returned to the room.

Thus has been our life for the last few weeks.

Keeping my feelings in check isn't always easy.

Separating the man from the illness isn't always easy.
I love this man,
I hate this illness.

The other day he told me that I would be better off without him.
I told him I wouldn't really be and he asked me why.
My answer was because he made me want to be a better person.
He always has.

Then he placed an order for food. He knew exactly what he wanted and how he wanted it.
I smiled, prepared it and returned to him announcing
"Order Up!"
We laughed, he called me a smartalic and I agreed.

And who says men wont ask for directions

24 hrs after Hubby made his I love you statement, he once again reverted to being in the V.A. Home and me as his caregiver.
The statement/question he made this time was "You have a contract to do this (take care of him) don't you?"
I answered him without skipping a beat. "I sure do. It's called a marriage license".
The look on Hubby's face when I said it was priceless.
A combination of shock, confusion and disbelief and the smirky you're pulling my leg look, all rolled into one and it almost made me laugh out loud. I had to turn away from him and started typing on my facebook.

We settled into bed for the night , or I did anyway because Hubby wanders around at night and raids the refrigerator.
About 2 1/2 hrs later he called out to me. I shot up so quickly that for a moment I had lost my bearings then I noticed him sitting on the side of the bed.
I asked if he was okay but he responded no, he was lost and obviously frightened enough to admit it.
He didn't know where he was or how he got there.
He wanted to know where the doors led too and who was here.
He was shaking and I spoke calmly and reassuringly.
He settled in the bed still shaken and admittedly scared.
I held him close and asked him if he trusted me. He replied yes.
I asked him if he knew he was in a safe place. He said he thought so.
I followed through with those feelings to reaffirm we were in our own home and bedroom, nobody was here but us and everything was okay.
He eventually calmed down and drifted off while I pet his head.

According to Hubby this wasn't the first time this had happened to him but the first time he admitted he was afraid.
I so wish that fear was something Hubby never has to encounter but when he does I pray that we can deal with it quickly and easily.
I think we handled it quite well.

Denied

So it's official.
Hubby received his official decision from the Veterans Association regarding Aide and Attendance and the word is that although he does need 24 hr care he does not qualify for it since his condition is not part of his service connected disability. I was aware this would be the road block.
SO...
Onward we go just like we have in the past. And that's okay :)

I did learn one thing in the decision.
Apparently his records indicate that he was showing signs of dementia in Jan 2005.
How was I blind to this?!

Oh well, I'm not going to dwell on it as a negative.
I'm going to concentrate on the here and now and I am FULLY going to concentrate on his words to me last night.

I thought he was asleep when I crawled into bed.
He stirred and rolled over toward me and said,
"You know, I sure do love you."

You know what Hubby? "I love you too" :)
And I gave him a good night kiss.

Annual Review

Today was our scheduled day for the Veterans Association to review Hubby's care and well being by doing a home visit.
Hubby kept asking me when the Dr was going to come and I had to keep reminding him no Dr was coming.
He was set that he had a few things he wanted to get straight with the Dr.
Again I informed him that no Dr was coming but it never sank in.

I was prepared with all of the financial information.
My box was full of receipts and accounting ledgers, detailed and condensed information for funds spent. How and why and where. Everything sorted and organized.

I spent yesterday picking up the house so it didn't look like Hubby was a prisoner in a junk yard.
I actually cleaned house, more because I was nervous about the visit.
Why was I nervous, you ask?

Well I know that as far as the financial stuff goes I was doing everything Okay. As stated above, very organized and meticulous.
But what I was nervous about was Hubby.

What would Hubby say?
Would he tell them how he thought I wasn't his wife?
Would he tell them that I have been stealing his money?
Would he tell them that he wanted to leave here?

The unknowns with dementia are upsetting enough as they are, but, knowing that someone has the power to change your life with the click of a pen is a little unnerving. So I clean. 

My portion of the review went off without a hitch. As a matter of fact the lady that arrived to do the review was very impressed with my thoroughness.
Then came her part with Hubby.
I asked Review Lady if she was aware of his Lewy Body Dementia and thankfully she was. Hey, she is a paper pusher you know. Oh and a nice one by the way.

I led her to Hubby's room and left them to visit while I went into another room. Not far enough away to be out of earshot though.
Well, you never know when I might be needed!

I heard Review Lady ask Hubby the standard mini Mental Questions. Which I thought was funny since she isn't a Dr but perhaps she needed to verify his dementia.
Hubby remembered his name and Birthday.
Branch of service and even his Service number!!! (Impressive!)
He didn't remember what years he served though.
Review Lady asked him the day and date, the president, all of which he did not know.
Then she asked Hubby if he knew where he was.
Hubby said in a home.
When asked if he knew what kind of home Hubby replied "A V.A. Home"
He was asked who takes care of you?
He replied, "She takes care of me" (I will feel safe to think he pointed towards the direction of the door I left from)
Review Lady asked if Hubby was aware he received V.A. monies.
Hubby said No (I almost snickered)
Then she asked if Hubby received a weekly Allowance, Hubby replied No (True answer only because he doesn't ask for anything)
Review Lady asked Hubby if there was anything he needed.
(Holding breath)
Hubby declared he needed more money (LOL!!!)
Review Lady agreed that would be nice and she would like some too.
They laughed.

Review Lady's final question for Hubby was "Are you being well cared for?"
Hubby replied "Yes, it's good here."

What a relief to hear that. After all the days of wanting to go home and accusations of theft and talk of leaving.

Review lady left the room and said her goodbyes but before she did she asked about me and how I was doing. Informed me that there wouldn't be a need for another review for 3 yrs. And she said Hubby looked great, and appeared very well cared for. He even smiled for her.

It's always good to have affirmation when we think we make so many mistakes.
And even Hubby, somewhere,in his brain, he knows he is in a good place.
It's been a good day and the house is clean to enjoy it :)

She's supposed to be my wife

That's what Hubby told the Dr he saw the other day when asked who I was.
But Hubby doesn't really believe it. sigh

Sometimes I just get so tired of caregiving for Lewy Body Dementia that I don't want to even think about it, talk about it, research it,  blog about it, read about it. Unfortunately it's like air, caregiving is vitally needed so you go into auto pilot. Or at least in my case you do. I'm hoping it's just this dreadful heat we are having. A body doesn't want to do anything in it.

So where are we? Lets see. Still in our holding pattern except for some unexplained anxiety Hubby has been experiencing lately. We had an appointment with the Veterans Admin for Aid and Attendance a few days ago. We don't think he will qualify because his problem is not his service connected disability. I didn't really have high expectations for it but we followed through knowing all they can say is No.
So we get the appointment to see the Board Dr.
Hubby needs a 2 hr window to get ready to go ANYWHERE! Our appointment is in the afternoon so I don't have to get him up early.We have over an hr drive which is always difficult for Hubby. He sleeps or rides with his eyes closed so that helps. Big City traffic distresses me AND Hubby. The traffic itself for me and the amount of stimulus for Hubby.

As we prepare for the day I ask Hubby if he would like to stop and eat before we go. Hubby agrees and we stop at out favorite restaurant for lunch. Hubby allows me to use his wheelchair to take him in. This is actually the second time he has conceded to it's use getting into the restaurant for which I am VERY grateful.

Served and filled we make the trip to the Big City.
We arrive in plenty of time, check in and sit in the waiting area.
We are quickly called to the Dr office.
Now if you are familiar with the V.A. you know this is a rare thing indeed!
The Dr proceeded to ask Hubby a few questions.
Name,  check but spelled his middle name wrong
Date of birth, check
Age, He didn't know and looked to me for the answer
Who I was, answer, "She's supposed to be my wife". Still stings but shake it off.
Where were we, check
What was the date, unknown
What was the day, another look at me for answer
Who was the president, unknown
What town did we live in, check
What was our address, unknown and looked to me for answer.

Then Dr asked me some Qs about Hubby's abilities to care for himself , walk or be alone.
Dr showed me Hubby's THICK file that was going before the board.
Dr explained what our obstacle was.
Dr said he would help all he could and we were finished.
People this took ALL OF 10 MINS!! from wait time to leaving.
Going to the bathroom before the hr long trip took longer!!

Every one of these Qs could have been asked over the phone, or gleaned from his records. Especially from the form that his PC Dr filled out for this very thing just a few months ago!
The government, sheesh!

So anyway we make the trip home, stop by the fruit stand for the green tomatoes on the way and a trip to the store for milk then home.
I do not know what happened at this point but Hubby became agitated at me and refused to let me get the wheelchair to help him get to the house. For Hubby, the walk to and from the car is rather long so he uses the wheelchair and I am considering a few yard and parking modifications.

His anger was verbal in nature and the heat was high. He refused to let me assist in any way and told me to get away from him. The more I tried to get him to explain the more anxious he got. Realizing I wasn't helping the situation I left him there and came into the house watching him from the window.
Hubby struggled to get around the car but eventually made it only to get 'stuck' as soon as he needed to let go of the vehicle and walk without support. Seeing this I offered to assist in a matter of fact non threatening way.  "Honey, I'll be happy to get the chair for you." this was met with a hard look and a wave off. Again I retreated to the house. Watching Hubby let loose of the vehicle and 'freeze' in place was heart wrenching. I worried about the heat also. Yet no matter how many times I offered assistance he refused. Eventually he walked to the front of the car into the shade, was able to get a hold of the house and work his way to the porch along the wall and to the front door.
Once inside he was hot and HOT!
I left him alone as he went to our room, undressed and got into bed. I never knew what set him off but as the night came he seemed in a little better mood.

Anxiety continues to plague Hubby but not like that day. At least he isn't angry and I can deal much easier with non angry issues.
Most of the anxiety seems to hit at night, Hubby's internal thermostat goes haywire and he is usually burning up. I put the fan on him directly and it seems to help.

Another thing I noticed is that when this happens to Hubby he stresses about my whereabouts and hollers for my presence. Most of the time I am in the room pounding away at my FB games or looking for amazon deals so if I happen to be in another part of the house he will begin to yell "Honey!" Which I find funny that he does considering he isn't quite sure who I am, but then again, Hubby has always been a flirt ;-)
I'll come running only to find him confused, restless and unsure of himself. I make him comfortable as possible and sit with him until he sleeps.
Specifically last night I was busy in the kitchen when Hubby yelled for me. At first I said I would be right there, hang on, but he yelled again leaving me to believe he had fallen and needed help or something like that. I ran to the room to find him in bed but distressed. I asked if he was Okay to which he replied, "NO I'm suffering" I snuggled up to him until he settled down.

Anxiety is the new norm.

Another new norm is Hubby's declaration of his death. He talks about it quite often.
It goes along with his desire to move away and 'go home' to live alone. Wherever home is.
Hubby isn't sure where home is exactly but he knows this place he is in is not it. He believes this is a hospital that he has been mysteriously brought to and I am his caretaker everyone is trying to convince is his wife. I feel bad for Hubby but if I were the one needing care I think I would want me to be the caregiver. Although I tire, I'm pretty good at it. LOL!! ;-)

And me? I have finally overcome my mental hurdle about exercise. I wanted so much to attend a gym not just for the exercise but for the motivation, support and communion with others. But it was out of my reach so I sat frozen basically in my own depression UNTIL I watched an old episode of Bones ( I love that show) anyway, in the episode she and her partner Boothe were interrogating a woman. The woman was quite large, to be polite, and as they walked in the room, Boothe covered his nose and asked "What's that smell?" Bones, answering in her direct, scientific manner she has, said, "Mold, morbidly obese people have a tendency to develop mold in their fat creases." I nearly fainted and my hurdle for exercise was jumped! I did not wish that to be me.

So I started changing my eating habits and began ATTEMPTING (major emphasis) the couch potato to 5K challenge. It has NOT been easy as it's taking me 2 weeks to accomplish week 1 but I can see results not only on my scale but in the way I feel.
I use the 20 mins specifically for prayer time (in addition to the sporadic throughout the day conversations)
I changed how I thought about me, God gave me a job, caregiving. How could I continue to do it properly without the right tools? My body and mind are all part of the caregiving package and I was not using them to do the job properly. I could feel my own health failing. It needed repair. Just like any piece of equipment we have that might need repair I would see to it that the piece was repaired or replaced.
Since I didn't want to be replaced, ie having to place Hubby due to major illness of me, it was time to repair the Temple.
In my eating change came Hubby's eating change. Healthier choices, smaller portions, more fruits and veggies.
No candy, few sugars. Hubby's change is less restrictive than mine. If he asks for it he still gets it but I don't volunteer those things or have them readily available, well except for the fudgepops. They will have to be a special trip to the store.
I even tried to give up my morning coffee but that was the result of a 3 day headache! I couldn't live with that so I welcomed it back with open arms. I'm gradually cutting back on the amount and it seems to be working.

I purchased a juicer for fresh juice.
I LOVE IT!
I HATE IT!
I only hate it because it gives me thoughts of  wanting to plant a garden next year! LOL!! ;-)

These changes are not easy, I won't lie and say they are a breeze.
They haven't given me miraculous power to be superwoman. They are just a step I needed to take for me.
I still get tired of caregiving.
It consumes my every thought and action.
Even when the aide is here is still not down time. I must run errands and be aware of the time.
Everything I do has to be with Hubby in mind, even at the back of it.
And if it's not supposed to be, how do you separate him from it?

I'm still challenged in my caregiving roll but I'm trying to stay positive.
I know the changes are inevitable and I hope to be able to roll with them.
There are just some days I'm in caregiver overload and I want to sit down and say, No thanks, I'm good.